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Overview
An estimated one in thirty-six children in the United States is diagnosed with autism. New research has shed light on the many factors that determine a child’s trajectory—but many parents are still navigating this complex terrain without a road map. Pediatric neurologist Dr. Suzanne Goh has spent decades working with autistic children, and in this practical and research-based guide she shares her renowned and revolutionary model of care: an innovative, whole-child approach that combines optimal medical treatment with the most effective strategies for advancing cognition, communication, and behavior.
Demystifying a wide range of diagnostics and therapies and offering new insights into the neurological, biochemical, behavioral, and social factors that play a role in successful outcomes, the book is an essential resource for understanding all of autism—a strengths-based approach that helps parents design a comprehensive treatment plan. It is also a celebration of what each autistic person brings to the world—and how parents can best nurture the remarkable uniqueness of their child while setting them up for the future they envision.
Product Details
| ISBN-13: | 9780593712733 |
|---|---|
| Publisher: | Penguin Publishing Group |
| Publication date: | 04/09/2024 |
| Sold by: | Penguin Group |
| Format: | eBook |
| Pages: | 336 |
| Sales rank: | 598,422 |
| File size: | 6 MB |
About the Author
Read an Excerpt
The hotel lobby was buzzing with parents, doctors, therapists, and educators, all picking up registration packets for the four-day conference. A quick review of the program showed more than sixty presenters covering topics like navigating school-based services, approaches to behavior management, augmentative and alternative communication, strategies for executive functioning, diet and nutrition, gastrointestinal conditions, immune function, and my own talk on seizures. Just the titles and descriptions of the presentations were a lot to take in.
As I rifled through my packet for my presenter's badge, I heard a familiar voice call my name. I turned around to see Joanna, the mom of my young patient Andy, a vibrant three-year-old with brown hair and blue eyes, who had autism, epilepsy, and a genetic condition. In addition to reading everything she could about Andy's diagnoses, Joanna was caring for Andy's two-month-old brother, so I was amazed that she always arrived for appointments with a list of insightful questions. I was also amazed that she'd managed to make it to the conference on an early Saturday morning.
"Hi, Joanna! What do you think of the conference?" I asked.
Her bright smile faded and tears filled her eyes. She said, "It's too much. I don't know how to do this."
I leaned forward and put a hand on her arm. "Just take in what you can and that's more than enough. Write down your questions, and we'll go through them the next time we meet." She nodded and we walked through the crowded hall together.
Unfortunately, being overwhelmed by information about autism is common. Just twenty years ago, information was hard to find, but now there's more than any parent or professional can possibly absorb. The sheer volume can lead parents on an endless search fueled by the belief "If I knew more and did more, my child would be better off." Many parents I meet have tried dozens, sometimes hundreds, of interventions. Even after pouring significant personal and financial resources into therapies, they doubt whether they've done enough. That persistent uncertainty takes a powerful toll. It can make you feel as if your efforts have been a failure when the truth is that they've been heroic. If you find yourself fluctuating between wanting to do more and not knowing if you can handle more, you're not alone.
Having a full understanding of autism doesn't mean knowing every elimination diet, nutritional supplement, medication, or developmental-behavioral approach ever developed. Having a full understanding means having a holistic framework to build a program that supports all aspects of health and behavior that are important for your child, based on their unique profile. It means knowing where new pieces of information fit and what to do with them, and it means becoming aware of all the people and places that can help your child flourish. With this understanding, you'll know you're doing the best for your child.
Autism Plus (+)
Autism is a single word, but not a single thing. Each autistic person is a unique individual with autistic characteristics that are unique, and each person may also have a unique set of co-occurring features (the plus in autism plus).
Today there is a mountain of information about autism. Researchers, doctors, therapists, public health officials, product manufacturers, service providers, advocacy organizations, parents, and autistic people themselves have strong views. As you might expect, they don't all agree on what autism is or how it should be approached. But they do agree that autism is multidimensional. As you begin to see a fuller picture of your child, you'll recognize that these dimensions aren't so much problems that need to be managed or fixed as they are opportunities to better understand and nurture your child and their magnificent mind.
Autistic Characteristics
Autistic characteristics are human characteristics that should be viewed as variations along a continuum of human traits, not as deficits or deficiencies. These characteristics fall into two categories:
(1) Differences in social communication and interaction, such as
a toddler who has no trouble hearing but doesn't respond when their name is called
a five-year-old who shows signs of enjoying toys and other activities but doesn't share that enjoyment with others (doesn't look at others or include others)
an eight-year-old who can talk at length about favorite topics but doesn't engage in back-and-forth conversation
a teenager or an adult who's unsure what others are thinking or feeling and may cope by avoiding social situations
(2) Differences in flexibility with thoughts, behaviors, activities, or sensory responses to the environment, such as
a toddler who lines up toys rather than playing with them in other ways
a four-year-old who frequently flips light switches on and off
a seven-year-old who seeks out certain sensations (such as certain smells or textures) but who covers their ears to avoid certain sounds
a ten-year-old who likes to arrange objects in a specific way and doesn't respond well to small changes in daily routines
a teenager or an adult who has a specific topic of intense focus that occupies much of their time, thought, and conversation with others
These are just some examples of autism's core characteristics. It's important to remember that autistic differences in social interaction and behavioral flexibility are unique to each person. No two people are the same, and characteristics can change quite a bit over time, so the autistic characteristics your child has today are likely to change as your child grows and develops.
Autistic characteristics also seem to differ between males and females. Some research studies have found autistic girls and women are more likely to
recognize when social interactions are expected
imitate others in social interactions
be described by others as "passive" or "shy"
show characteristics of perfectionism
have higher language abilities
have intense interests that involve people or animals rather than items or objects
What are your child's autistic characteristics? If your child has had an autism diagnostic evaluation, the results of that evaluation probably included a detailed description of these characteristics. But rather than relying on a professional's observations, try to focus on what you've noticed about your child.
Write down your own observations about
how your child communicates with others
how your child acts around others, including other children, adults, family members, and strangers
how your child responds when other people approach them
what your child prefers to do during free time
how your child responds to sensory information from the environment, like what they see, hear, smell, taste, or touch
Some of the things you've written down are likely to be features of autism, but others may not be. From my perspective, the distinction doesn't matter all that much. What's more important is that you're noticing your child's characteristics and that your overall understanding of your child is growing. Throughout this book I share information and exercises to help you do this because the knowledge you have of your child will empower you to support their development in exciting new directions.
Co-occurring Features
Anything that isn't captured in the two core categories of autistic features but that happens more frequently in autistic than in non-autistic people is considered a co-occurring feature of autism. Co-occurring features include a range of medical, developmental, behavioral, and mental health features.
Research in this area has blossomed in recent years. For some people these are simply characteristics that shape their personality. Others, who meet the threshold for a medical diagnosis, can benefit from medical care. About 90 percent of autistic children have at least one co-occurring condition, and more than half will experience four or more co-occurring conditions. Unfortunately, these conditions aren't always recognized, so they're often unaddressed. A child's self-injurious behavior, for example, might be called "part of autism" without anyone looking deeper to see if gastrointestinal pain, headache, heightened stress, sensory processing differences, or other explanations for the behavior might exist. The fact that autism is a description of a set of characteristics and not a biological cause means that attributing any core or co-occurring feature to autism itself is incorrect. This common mistake prevents appropriate steps from being taken to find the true underlying reasons.
Co-occurring medical symptoms or conditions:
Genetic conditions (these conditions are due to alterations in genes, chromosomes, or other genetic information)
Mitochondrial and other metabolic disorders (these conditions affect the way the body converts nutrients into energy or other biochemical processes)
Epilepsy (seizures)
Sleep disturbances (such as difficulty falling asleep or staying asleep)
Gastrointestinal (GI) symptoms (such as abdominal pain, constipation, and heartburn)
Immune system dysfunction
Co-occurring developmental, behavioral, or mental health symptoms or conditions:
Delays or other differences in motor, language, cognitive, or emotional development
Attention-deficit hyperactivity disorder (ADHD)
Obsessive-compulsive disorder
Depression
Anxiety
Self-injury
Aggression
Research studies have found that some of these features tend to accompany each other. For example, epilepsy and sleep disturbance often occur together. This could be because both can be caused by differences in how neurons (nerve cells) connect with each other. Some studies have found that GI symptoms and sleep disturbance also frequently occur together, and this may be because GI symptoms like heartburn, constipation, and abdominal pain can cause discomfort that keeps a child from falling asleep or wakes a child from sleep. Children with an underlying genetic condition are also more likely to have epilepsy and cognitive disability. So far, research studies have not consistently shown differences in co-occurring medical conditions between boys and girls.
A Holistic Framework
Many researchers dedicate their entire career to studying just one of the core characteristics or co-occurring features of autism, but for parents, the path to building an effective program for your child begins by adopting a much wider view.
The approach I take is to imagine the inside of a cell in the brain called a neuron. Your child's brain has close to a hundred billion neurons.
Neurons have electrical and chemical functions. Electrical signals travel within neurons, and chemical transmission happens in the spaces between neurons, called synapses.
How neurons work at a chemical and electrical level is different for different children.
Zooming out to a slightly larger view, we can consider how your child's neurons communicate with one another to create brain networks in each of these major developmental domains:
Sensory (how we sense the world around us)
Motor (how we move our bodies)
Cognitive (how we think, including attention, memory, planning, and problem-solving)
Language (how we understand and use words to communicate)
Social (how we interact with other people)
Emotional (how we process feelings)
Zooming out further, we look at the rest of your child's body to consider the function of gastrointestinal, immune, and other body systems, which all influence your child's brain development.
Finally, we can step back for an even broader view, to see your whole child and how their growth-represented in this image by the tree-is influenced by the people and settings around them at home, in school, and in the wider community.
This approach to viewing autism, in which we can zoom in to a microscopic level and zoom out to a child's place in their home, school, and community, allows us to appreciate how everything is connected. Though the core characteristics of autism relate to the biggest-picture view-how a person experiences and engages with the world around them-underneath are multiple layers of brain and body function that each offer an opportunity for investigation, understanding, and individualized support. Seeing the whole interconnected view allows you to support your child in the most important ways. Tunnel vision, on the other hand, can make the path forward more difficult because the full benefit of any particular intervention can't be realized when other areas are unsupported. Without a balanced, holistic approach, interventions intended to help are more likely to cause harm.
Some common examples of tunnel vision in autism care include
lack of carry-through with tests or treatments for co-occurring medical conditions
hyperfocus on diet and nutritional supplementation but lack of follow-through with home activities recommended by a child's therapists
seeking more hours of behavior therapy, also called applied behavior analysis (ABA), than recommended by the therapy team while not following through with recommended sensory-motor therapies (e.g., occupational, physical, and/or music therapy) or recommended medical tests and therapies
overmedication for behaviors that could be effectively addressed through changes to the daily routine and home environment
In a whole-child approach to autism, you can visualize your child's development like a tree.
I use this framework to help the parents and professionals I work with see how the elements of whole-child autism care come together. Starting from the bottom, we see that supporting the health of the home and well-being of all family members, including parents, child, siblings, and other caregivers, builds strong roots for child development. Improving a child's experiences and learning opportunities at school and in the wider community also contributes to a stable foundation for growth.
The trunk of the tree represents the health of the brain and body, which includes a thorough understanding of and appropriate support based on your child's genetic and metabolic profile and any co-occurring medical conditions. It also includes supporting your child's nutrition, exercise, and stress reduction-all of which make a positive difference for your child's development.
On that foundation of health, the tree grows branches, which represent brain networks across all major developmental domains: sensory, motor, cognitive, language, social, and emotional.
The tree then extends into higher-level skills in athletics, music, and arts and in academic and vocational studies.
Optimizing physical and mental health is a lifelong goal and supports your child's success in self-care skills, relationships, recreation, and making a contribution to the world.
Finally, the experience of joy, like the rays of the sun, is what nourishes success in each of the other areas. At the same time, the reason for supporting all the other areas is to enable the experience of joy. Keeping this top of mind will guide you well in the decisions you make for each step of your child's care.